Guest guest Posted August 22, 2009 Report Share Posted August 22, 2009 Ah Kris - that urge to throw ones self across the office threshhold to get the attention of the doc. To make him actually look at the child and not see the DS - just a child with an issue. And to be born again as the tooth fairy! > > > Hi Carla, > May I suggest that you get a second opinion from a pediatric endocrine > doctor? > > My child was tested annually (at annual physical). I always brought a copy > of the DS medical checklist which shows what should be done at what age > throughout life so nothing would be overlooked. Tests always came back fine. > > My child was always severely underweight. He suddenly started gaining > weight in 5th grade. At every pediatric appointment for nearly a year, I > asked why he was gaining weight & got the usual " Down Syndrome " or puberty > response. > > I knew nothing at all about the thyroid only that he had to have this test > annually. Fortunately he was sick often in those days, so I continued to > ask. Finally one of the docs in the group said hmm, he has gained 20 lbs > since Sept (no duh) & ordered a blood test. > > Long story short, our pediatrician personally called us (scaring the crap > out of me by doing so) with the results (way too elevated) & referred us to > a Pediatric Endocrine Group stat. Who we are still with at present. > > The endocrine doctor is the one who prescribed the thyroid meds & followed > him every 2 months to make sure the meds were working the 1st year. He is > now seen every 3-4 months. Blood tests at each visit. > > Sadly, the thyroid issue occurred in between his annual physical & all but > one of the doctors in our ped group discounted my concerns by being blinded > by the down syndrome label (ie most kids with ds have weight problems) > > I say sadly because my once waay too thin child is now waay too overweight > despite the fact that when he packed on those 20+ pounds he was not eating > or drinking any more than he ever did. > > And that was my 1st lesson in confronting the " not listening but assuming " > syndrome that some professionals exhibit. > > I knew something was wrong & felt so helpless. Later I felt guilt. ALOT. > Today, I promise you that I would chain myself to whoever was not > " listening " until they did listen (grr) > > So, go with your Mom instinct. Nothing lost in getting a second opinion but > alot gained concerning your peace of mind and/or child's best interests. > > Sorry for long post. Verbose brain, lol. > > Hugs. > Kris > > > > > > I know there have been discussions before in regards to thyroid levels > > but have to admit that I didn't pay much attention as my daughter is 13 > > and has never had an elevated level. But at her checkup this week they > > drew blood and they called me to say her TSH level is elevated. The > > doctor ordered an additional test of a Free T4 which came back normal. > > They just want to wait and repeat in 6 months. I know that often > > doctors miss treating thyroid problems and wanted to ask anyone that has > > done this already if this sounds the right way to go. I have no > > experience or knowledge in regards to this at all. > > > > Thanks, > > Carla > > > > > -- Sara -To Life! Quote Link to comment Share on other sites More sharing options...
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